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I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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I’ve noted a definite trend over the past year: my postings on this blog have migrated largely into the realm of poetry. It was not a conscious migration. I think that when I am in the midst of such uncertainty, as we’ve been with Josh’s right ear, I need to use the sort of vision-scope that only comes through the lyrical. I am touching down into tender places; touching lightly so as not to upset any of the delicate balance we might have found on a given day (or week or month).

But this blog has, in the past, gone into great detail about Josh, my third child’s hearing loss journey. If you’re here because of your own (or your child’s) hearing loss, you may want to check out past entries to get all caught up. Still, I haven’t posted in a long time, so I need to update the timeline.

Josh is now six and has started Kindergarten. He still wears a hearing aid in his left ear, which shows moderate conductive loss (so it has slipped through the years from mild-moderate loss–we are not sure why he’s losing ground because conductive loss typically remains stable). This year, Josh is using an FM system at school and loves it–he loves hearing his teacher so clearly in his left ear.

In May, 2012 (at age 2.5), Josh had a tympanoplasty and an ossicular chain reconstruction, with a PORP (titanium rod) replacing his first two middle ear bones. He needed the tympanoplasty to repair his eardrum, although we would have waited until he was older if he hadn’t needed major dental surgery. The decision to replace his first two middle ear bones was made in the middle of his surgery. You can read more about this surgery on this blog if you look under “tympanoplasty.”

The surgery restored Josh’s hearing to (at one point) 10 db across all frequencies. It was pretty miraculous. We’d often forget to use Josh’s left hearing aid because he was hearing so well in his right ear, we wouldn’t even notice when his left ear went unaided. Still, within 5-6 months of the surgery, that ear started to steadily discharge an amber greasy matter. We saw our former ENT many times in the following two years; occasionally the discharge was cultured and never churned up anything. Perhaps his ear just couldn’t rid itself of ear wax, we were told.

In December of 2013, Josh’s hearing in his right ear started to decline–slowly, but steadily. We’d chip away at 5 db every 3-6 months. It was worse, for sure, when he had a cold. His former ENT raised the possibility of cholesteatoma and ordered a CT exam. The CT exam showed excess fluid in the ear and so Josh was put on three-week course of strong oral antibiotics (at age 4, this was Josh’s first time taking antibiotics–now it’s become routine) and it was hoped that all was resolved. It was summer then, so Josh seemed to improve (although his hearing never went back to 10 db–we did get to about 20 db).

During the 2014-2015 school year, Josh had more trouble again with his molars (all molars had been capped in his surgery at 2.5). Two of the roots became infected and he lost 2 molars–with spacers inserted in their place. Are the teeth issues tied to the middle ear issues? No one can tell us. We’ve been told Josh’s issues are syndromic, but after repeated testing, Josh’s genetic doctor has not found an exact cause or a similar case to Josh’s.

In March of 2015, Josh had terrible ear pain in his right ear (9 on a scale of 10–and Josh is pretty experienced with rating pain). On the way to the ER, the eardrum ruptured, relieving his pain–and he was placed on more oral antibiotics, instead of drops (because it was the ER, after all). The next morning, Josh awoke in a panic; he had absolutely no hearing in his right ear. He also ran a fever for about a week, in spite of the antibiotics. His infection eventually healed, but his hearing stayed at about 25-30 db. Three weeks later, the same thing happened; fever and loss of hearing his ear. His ENT refused to engage in a conversation about what was going on and said Josh was unlikely to have cholesteatoma, because the CT scan a year earlier hadn’t shown it.

We went to the Mayo Clinic for a second opinion. Our new ENT suggested sedating Josh to go in and see what was going on. He told us that CT scans and MRI’s don’t always catch cholesteatoma (and it can hide out in the mastoids). On June 19, 2015, Josh was sedated at a hospital in Rochester, MN. The ENT came out from the OR to tell us that he was 1000% sure Josh had cholesteatoma–it was coming out of his ear and had wiped out some of the eardrum. He proceeded that afternoon with a five-hour surgery to remove the cholesteatoma in a wall up procedure (retaining Josh’s ear wall); tympanomastoidectomy.

Our ENT told us that he was confidant he got all of the cholesteatoma (although one can never be 100% sure because if a small speck is left, it comes back). Cholesteatoma is basically extra skin that gets in the ear and grows much like a tumor but is almost always benign. Where cholestetoma can wreak havoc is it can erode the ear bones, the facial nerve, and worst case, can grow near the brain and cause meningitis. Thus, it has to be dealt with if present.

After removal, cholesteatoma returns in 30% of the cases (I’ve seen the odds at 50% for children because they often have eustachian tube disfunction, which can create a pressure that pulls in the eardrum, creating a good environment for cholesteatoma). Our ENT also was able to retain Josh’s previous PORP because it wasn’t in the zone of the cholesteatoma.

By October of 2015, Josh’s hearing on the right had returned to 25 db across the frequencies. We tried a hearing aid, but Josh complained it was “echoey” and that the ear mold rubbed against the still-angry scar where they took cartilage for his new eardrum. So, we gave up on aiding the right side, for now.

Our ENT is monitoring Josh but did not propose a “second look” surgery at the six to eight month point, which is done when an ENT is not sure they got all the cholesteatoma and they want to go back in before any returning cysts get too large. While the cysts are yet small, an ENT has a better chance of eliminating all of the growth.

Our ENT told us if he did have to go back into Josh’s ear a second time, he’d likely do a “wall down” procedure, that would involve removing Josh’s ear wall and basically eliminate the outer ear, creating a large cavity that couldn’t ever get water in it and has to be cleaned out every six months. I’m not sure how Josh could have much hearing left after a “wall down” procedure. It’s so hard to think of Josh never being able to swim or play near water.

Well, Josh was almost at the five month point past surgery and we were feeling pretty good, especially since it seemed this tympanoplasty actually took and Josh’s new eardrum is holding up really well. Josh had a bad cold last week and then awoke on Thursday morning, as my poem references, with a fever and ear pain in his right ear. He was placed on antibiotics over the phone since his ENT at the Mayo Clinic cannot see him until this coming Thursday (the 19th). Josh’s hearing has been knocked out again too. This makes us quite worried about the return of cholesteatoma because colds causing ear infections were rare in Josh before cholesteatoma and they never knocked out his hearing.

We are still out here hoping and praying for the best possible result; and the ENT will unlikely be unable to “see” anything on Thursday, as cholesteatoma exists mostly within the middle ear. I’m sure Josh will be monitored more closely now, however. I’m not sure if this event is enough to have the ENT schedule a “second look” procedure. We aren’t eager for more surgery; we fear Josh having a lifetime of surgeries. We may even seek a third opinion if a wall-down procedure is proposed–because this is, after all, Josh’s entire lifetime ahead that will be impacted.

“Do we have anything to drink in this car,” my almost five-year old, Josh, asks from his car seat as we pass by shoulder-high cornfields.

“Nope,” I answer loudly because my son is hearing impaired and it’s difficult for him to hear my voice in the car.

“Huh?” he says.

“No, we don’t,” I say, taking care to enunciate my words. We’re on our way home from the grocery store. I am hoping he doesn’t remember that we bought him strawberry kefir. I don’t want to pull over by the side of the road to access the back of my Subaru wagon.

Instead he tells me, “Only one other option then, which is to cut off my tongue.” Yes, he has hearing loss, but thanks to lots of early intervention and a vault-like memory, he is also highly verbal.

“Oh,” I say. “Trust me. I’ve considered that option . . . but I’ve decided that I need my tongue.”

Recently, I have given serious contemplation to tongue amputation because, two weeks ago, my dentist was prepping the last molar on my lower right for a crown. She shot Septocaine directly into my trigeminal nerve. No stranger to dental work, I managed to breathe through it. With the second injection, however, a mild electrical current reverberated across the right side of my tongue. I told the dentist, “I felt the anesthesia go into my tongue. I’ve never felt that before.” She assured me this was normal. She waited another minute or two before attempting another injection, which my hand reflexively swatted away as soon as the tip of the needle penetrated my skin.

I put my hand on the lower right side of my face. “It felt like you just dropped acid across my face.” She assured me that nothing hit my face, showing me that only the tiniest bit of solution had been released from her injection gun. She suggested that we delay the crown prep for another day. Eager to escape her office, I agreed.

Six hours later, when the rest of the anesthesia had worn off, my tongue remained numb. I called my dentist who suggested we give it more time. Forty-eight hours later, and still numb, my dentist finally admitted my nerve had sustained damaged but that, sometimes, it will repair itself. Sometimes? Sometimes?

It’s now been 238 hours and I still can’t feel my tongue. I’ve learned that the tip of my tongue no longer feels the food stuck between my teeth, so I walk around with leafy greens brightening my smile. But even though it doesn’t work as well as it used to, I still need my previously underappreciated, now defective, tongue to help me chew food and talk properly.

I look into the rearview mirror, so he can read my lips as I speak, and say, “Without your tongue you could only say, ‘I wuv you mom.’ You need your tongue to pronounce the ‘L’ sound.” And that’s good enough for him. He decides to keep his tongue as I have decided to keep mine, even if it is far less operational than 244 hours ago.

A recent self-portrait

A recent self-portrait

No shortage of interesting chalk art on our sidewalks this summer.

No shortage of interesting chalk art on our sidewalks this summer.

I have suffered from yeast/candida overgrowth as long as I can remember–at least since puberty. It used to take the form of vaginal infections but at some point in my twenties, about a year after child # 2 was born with a nasty case of thrush that lasted about six months, my candida overgrowth took up residence in my mouth. At first, the doctor’s fought it with liquid nyastatin, an anti fungal, which eventually triumphed over the thrush in my son’s mouth. For me, it never worked for long. Somewhere in my early thirties, however, my new doctor suggested trying Diflucan, an oral anti-fungal in a pill form. Whenever I took a Diflucan, it always seemed to knock out my thrush within 24 hours. But the thrush always came back. It got to the point where my doctor gave me a 12-15 count refill at the time of my annual physical so I could just go to the pharmacy and get a Diflucan whenever my mouth started to grow fuzzy and white (and sometimes itch). It was a good day when the pharmacy would allow me six pills at a time–not that I’d take them all at once but it kept me from having get to the pharmacy every time I needed a pill.

I even took Diflucan a few times during my pregnancy with J. I wasn’t cleared for the first trimester, but as soon as my second trimester hit, my midwife gave me the go ahead to take a Diflucan because I was convinced my out-of-control thrush was, at least in part, causing the crazy, awful morning sickness (that lasted all day and night), which I never experienced with my first two. All in, I took three Diflucan pills while pregnant. Not long after J. was born, Diflucan was found to cause some birth defects. As I understand it, it is no longer given to pregnant women. It is hard for me to now not wonder if somehow the Diflucan interfered with the proper development of J.’s middle ears and molars.

In the years following J’s birth, I began to notice that I would feel extremely run down after taking Diflucan. Perhaps this was merely a yeast die off reaction. (Lately, I’ve learned to not discount symptoms as mere die off reactions–not everyone is strong enough to detox). Overtime, my symptoms upon taking Diflucan were nearly as uncomfortable as just living with the thrush. I began to experiment with going longer and longer without taking the dreaded drug. Early last June I spent some time in a hot tub, which I’ve long known is a total “no no” for me, along with scented bath oils and soaps. Within days (or hours) I had total yeast overgrowth in my mouth and vaginal area. Fun times. I had been reading about the battle against yeast in one of the many “Kill the Yeast” type of books that I have in my library. This book instructed doctors to prescribe numerous rounds of Diflucan, day after day for weeks, to ensure that all of the yeast is killed. At that time, I had a small stock pile of Diflucan pills saved up from extending the time between doses. I decided to self-prescribe a mounted daily attack on enemy yeast (don’t stop reading here and try this same thing at home). So on June 6th I took one Diflucan and on June 7th, I took another. And on June 8th, I couldn’t get out of bed. I cannot really describe how bad I felt but it was likely the worst I’ve ever felt. Ever. I couldn’t tolerate light, I was so weak I could hardly stand, my head was in such pain I wanted to amputate it, and my digestive track made sure that I did in fact have to manage to crawl to the toilet every hour or so. I could hardly drink water even. I was more exhausted than I’d ever felt and yet, couldn’t really sleep. It felt the life force leaving me. I knew that if I felt that way long-term, I’d want to die. It wouldn’t have been an existence worth maintaining. Fortunately, Hannah was around to help out and between Hannah and Chris, the care of Josh was covered for a few days. Chris would sit by my bedside and say things about going to the doctor, but I couldn’t move and felt like doctors had yet to help me with any of this stuff. So I am sure that the yeast experts would tell me that I was experiencing extreme die-off symptoms (and I even thought that at the time) but even if this were the case, I am pretty sure that place I found myself one June 8-10 of last year was not healthy or desirable, even in the name of killing off yeast ( I’ll get into this more extensively in my next blog post).

On the first day that I felt well enough to get out of bed for a few hours, I went to a chiropractor that I had met at a yoga training about six months earlier. After a weekend spent in Yin Yoga training together, she took me aside and told me that she thought I was in adrenal fatigue. I discounted her diagnosis at the time, but had in fact spent the last 6 months watching my energy dip lower and lower. When I raised this with my MD, she offered anti-depressants. I was quite certain I wasn’t depressed (been there, done that in my twenties). In my desperation (and my frustration with all of the MDs who had failed me), I took the first appointment at this chiropractor’s office that morning. After about an hour of telling her my history and crying about how hopeless I felt, she told me that Diflucan actually is sort of like an antibiotic. It goes to work and kills fungus but it also wipes out all the good stuff that you need as well. She told me to stop taking Diflucan, even if I did nothing else. Well I didn’t do nothing else. I’ve done a ton else (will give detailed report out in near future post). I’ve gone to lengths I never thought possible to try to get my health back. I feel like I am getting closer on that front, but still not there. At the very least, however, I do believe I understand my yeast issues better than any medical doctor has, including the medical doctor I began seeing last November (’13) who also practices functional medicine. She too wanted me to take a two-week course of Diflucan. I am so glad I didn’t. I am so glad I stood my ground. And now, I am happy to say that I am one-year clean of Diflucan today. A small victory, but a victory nonetheless.

 

thatgirlArlene

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